Re: Seattle WA

[Guest guest]

,

One of the teaching hospitals in Seattle was part of the Remicade Clinical Trials for Sarcoidosis patients. I would call their Pulmonology Departments and see who the MD was that ran the program in Seattle.

The Trial was for: Inflixamab for Pulmonary Sarcoidosis with Ocular Involvement and started in Sept 2003 and was finished just this last March 2006.

I was part of the trial in LA-- in California. There were only 120 people worldwide in this phase II trial. Denver CO also has a Sarcoidosis Speciality Clinic that was part of the Trial.

It sounds as though your brother needs much more than just prednisone. Pred is great for the initial onset-- but once this has advanced throughout his body-- it's time for serious immune supressants. (Not that pred isn't serious enough--but it seems more to mask the symptoms--and when they take it away, the disease gets the signal to party-- and he'd be in more trouble than now.)

There are several different combinations that can be used-- it's trial and error to get the one that will best help him-- but it needs to happen quickly so that he doesn't lose more ground.

Do check out the ARCHIVES and LINKS-- the address should be at the bottom of this and every email that comes from the group-- so scroll down and check the bottom of the email.

There is a wealth of info in those areas of our site-- and you can print out the info and he can take it with him to his MD's.

Take care, and I will try later in the week to get back online to answer more questions. (Sorry, I'm in flare right now-- and need a break, but Rose and Darlene and KIm and Debbie are all wonderful!)

Blessings,

Tracie

Co-owner/moderator